Role of the Surgeon in De-escalating Emotion during a Breast Cancer Surgery Consultation: A Qualitative Study of Patients’ Experiences in Alliance A231701CD

Abstract

Objective:

We sought to examine how emotion associated with a breast cancer diagnosis impacts patient experiences during the surgical consultation, and explore opportunities for surgeons to mitigate the impact of emotion.

Background:

Patient engagement in decision making can improve satisfaction with care. Studies demonstrate that patients’ emotional states can be significant barriers to engaging in shared decision making.

Methods:

We conducted 30 semi-structured interviews with patients who participated in the decision aid arm of Alliance A231701CD, had low engagement, and experienced barriers to engagement. We used qualitative content analysis to analyze the interview data and organize it into overarching themes.

Results:

Participants recalled strong emotions with their diagnosis, describing it as devastating and shocking. Although several participants said that their emotional reaction to the diagnosis lessened over time, others expressed still feeling very anxious.

Participants described ways in which their surgeon helped to de-escalate their emotional state beginning with the establishment of rapport and continuing through treatment planning.

Participants valued surgeons who they perceived to be personable and compassionate, treated them as an individual, provided reassuring and matter-of-fact information about their cancer, and efficiently communicated plans for next steps.

Conclusions:

Patients with breast cancer often are emotionally overwhelmed during their surgical consults, which impedes their ability to listen and participate in decision making. However, surgeon behaviors can help de-escalate emotions. Addressing emotion is critical to support patients in reaching a decision for breast cancer surgery and is likely to improve patient satisfaction with the decision process.

Mini-Abstract:

Patients with breast cancer often are emotionally overwhelmed during their surgical consults, which impedes their ability to listen and participate fully in decision-making. However, surgeon behaviors can help de-escalate emotions. Addressing emotion is critical to support patients in reaching a decision for breast cancer surgery.

Introduction

Patient engagement in decision making can improve quality of care and patient satisfaction with treatment. Breast cancer clinical trials have demonstrated equivalent survival between breast conservation and mastectomy,^1,2 although patient-centered outcomes (e.g., local recurrence risk, body image) differ greatly. For most patients, their values and preferences should drive decision making. Consequently, patient engagement during the surgical consult is critical.

Prior work has demonstrated that patients’ emotional states can be significant barriers to engaging in shared decision making (SDM). Receiving a breast cancer diagnosis is associated with anxiety and distress.^3–6 Patients’ heightened emotional state can make it more difficult to communicate with clinicians, understand and remember information, and participate in SDM.^7–9 Emotions can also shape patients’ risk evaluations and influence the ultimate decision reached. ^10–15

The overall objective of this qualitative study was to understand patient barriers to engagement in decision making for breast cancer surgery. In this manuscript, we specifically examine how emotion associated with the breast cancer diagnosis impacts patient engagement during the surgical consultation and we explore opportunities for surgeons to mitigate the negative impact of emotion.

Methods

Study Context:

Interview participants were enrolled in Alliance for Clinical Trials in Oncology A231701CD testing a decision aid’s effectiveness at increasing socioeconomically disadvantaged patient engagement in decision making.¹⁶ This trial was a stepped wedge study conducted within the NCI Community Oncology Research Program.¹⁷ Ten clinics were randomized to the time of crossover from usual care to routine use of a web-based decision aid (Figure 1). Surgeons did not receive any specific training in shared decision making as part of the trial. The clinics were selected because they each served a high proportion of socioeconomically disadvantaged patients. All sites consented and enrolled patients (n=598). The trial assessed patient engagement by measuring Active Patient Behaviors in the audio-recorded surgeon consultation and by the Perceived Efficacy in Patient-Physician Interactions-5 on a follow-up survey after the consultation.^16,18–20 The study also measured various barriers to engagement.¹⁶

Figure 1. Clinic Sites of Interview Participants.

Interview participants were recruited from nine clinic sites that participated in Alliance A231701CD. No interview participants were recruited from the tenth clinic, Kapiolani Medical Center for Women and Children.

Participant selection for interviews:

An a priori goal of the Alliance A231701CD trial was to understand how observed barriers influenced patient engagement in the decision process. To achieve this goal, we conducted interviews with a sample of patients in the decision aid intervention arm who had low engagement (defined as the lowest tertile) and had at least one measured barrier to engagement (Figure 2).¹⁶ We used maximum variation sampling to recruit eligible patients across the participating clinics, with varied surgeons, and who experienced different barriers to engagement. Finally, we strove to sample patients with different racial and socioeconomic backgrounds to ensure broad perspectives were represented. Forty-seven patients were approached, and 30 (64%) completed the interview. The remaining 30 eligible patients were never approached because we reached informational redundancy, the point at which interviews were not yielding any new information. Participants provided informed consent for participation.

Figure 2.

Overview of Selection of Interview Participants.

Data collection:

We conducted one-on-one interviews via telephone or video call after completion of patients’ cancer treatment. Interviews began by asking participants to reflect on to their diagnosis and describe their initial reactions. We also reviewed participants’ survey data prior to their interview and asked them to expand on survey responses that indicated barriers to engagement. We ended the interviews with an open-ended question of “what else should I know about your experience with making the decision for breast cancer surgery?” (Appendix). All interviews were audio-recorded and transcribed verbatim.

Analysis:

Data collection and analysis were performed concurrently. We used qualitative content analysis to analyze the data.^21,22 Early interviews were reviewed independently by three investigators (MS, HN, NJ) to generate a preliminary list of conceptual codes that were used to reduce the data. The identified coding schemes were compared and discussed to reach consensus about a preliminary coding taxonomy, which guided primary coding of subsequent interviews. As new concepts emerged during subsequent interviews, the coding taxonomy was revised and earlier interviews were recoded. We used visual displays to categorize the data and organize it into broad overarching themes.²³ We used NVivo (QSR International-Melbourne) to manage data and facilitate analysis. As higher-level analysis progressed, we conducted two focus groups with five patients who were enrolled in the decision aid arm of A231701CD. These participants confirmed that the results resonated with their experiences. Participant quotes have been lightly edited for readability (e.g., removed filler words).

Results

Interview participants were cared for by fifteen different surgeons. Interview participants were 37% non-White, 30% socioeconomically disadvantaged, and 50% with less than a college degree (Table 1). The surgeons who cared for participants were mostly White (14/15), female (12/15), and fellowship trained (11/15).

Table 1.

Characteristics of Interview Participants

	N=30
Age (median, range)	61.5 years (38–72)
Race
White	63% (19)
Black	30% (9)
Asian	7% (2)
Socioeconomically Disadvantaged	30% (9)
Health Literacy (median, range)	14 (6–15)
Education
College degree or higher	47% (14)
Vocational degree/some college	30% (9)
High School Degree or less	20% (6)
No response	3% (1)

Patient Emotions

Participants recalled strong emotions associated with receiving their breast cancer diagnosis, such as shock, fear, worry, and uncertainty about the future. “It was shocking, everything stopped for a minute, it was just like, ‘Yeah, okay, I have cancer’, and it was very devastating” (Participant #20). Participants wondered “am I even going to see next Christmas with my family?” (Participant #7). Several participants had family members or close friends with cancer, which escalated the emotions associated with their own diagnosis: “So when you get that diagnosis and you know that it’s been terminal for family members, it’s frightening” (Participant #19). Participants also worried about the impact of the diagnosis on other family members:

The hardest part was how to tell my loved ones... Because for me, when you hear cancer, it was, like, death sentence. So for me it was like, how can I tell my loved ones that I may die? -Participant #5

The emotional nature of the diagnosis was also reflected in the kinds of questions participants contemplated after diagnosis. Participants wanted to know details about “how bad my cancer was” (Participant #22) and had questions such as “what is the stage? How big is the tumor?” (Participant #14), and “Is it curable?” (Participant #7). Several participants recalled having questions about specific treatment options, such as, “am I going to have to remove my breasts?” (Participant #10), and “would I have to have chemo?” (Participant #18). Many participants also expressed anxiety about how they would look after treatment, with one participant wanting to know if “my breast was going to be disfigured” (Participant #8).

Another participant said, “I think I was more concerned about, how am I going to look afterwards? I’ve seen pictures of people with total mastectomies that are frightening to see” (Participant #19).

Participants described varied emotional states at the time of the surgical consult. Several participants said that their emotions had calmed since receiving the diagnosis, although many women recalled still feeling very anxious. Some participants shared that their emotions made it hard for them to be fully present during the consult, using phrases such as “fogged up,” “a blur,” and “out of body experience” to describe how they felt. One participant explained:

When you have a cancer diagnosis, half of what they say to you, you don’t even hear because you’re so traumatized by the information that you’re getting and it’s just hard to take it all in.... you’re so wrapped up in what they said three seconds ago, you don’t even hear what comes after that. It’s almost like you’re outside of your body, watching this take place without the audio. -Participant #30

Another participant said she had trouble thinking of questions to ask during the consult because her “mind was racing” (Participant #7). When asked to elaborate what was on her mind, she explained:

Death, basically. Who’s going to take care of my family? I mean my kids are grown, but they’re still my kids. My house isn’t paid for, what’s going to happen to them? I don’t have life insurance, how are they going to pay for the house? I wasn’t even thinking about treatment or anything like that. Basically I was just thinking about the family. -Participant #7

Ways Surgeons De-escalate Emotion

Participants described ways in which their surgeon de-escalated emotion during the surgical consultation (Figure 3). Importantly, these activities span the duration of the consult, beginning with how surgeons build rapport when they first enter the room and continuing until the treatment is planned.

Figure 3.

Overview of Ways Participants Perceive that Surgeons De-escalate Emotion during Surgical Consultations

Building rapport:

Surgeons begin developing rapport as soon as they enter the consult room and continue doing so throughout all phases of the consultation. One participant appreciated that her surgeon took time to introduce herself and her explain expertise before proceeding with the consult.

You know, sometimes you just get scared going to the doctor’s office... because she talked to me before she put anything in the computer, she told me who she was, she told me her specialty, she told me that she likes dealing with this and how long she has been dealing with it... So, it was comfortable. She made it really comfortable. -Participant #9

Many participants commented on surgeon qualities that made them feel at ease. Participants appreciated surgeons who were easy to talk to; one participant said her consult was “like having a talk with a sibling or a peer, not like sitting down with a clinician” (Participant #29). Participants also valued surgeons they perceived to be friendly and compassionate: “She was warm and personable. Oh, she could explain it clinically, but she also put human into it” (Participant #27).

Finally, participants valued surgeons who treated them as individuals. One participant said, “I felt like they cared for me. Not that I was just, you know, ‘she’s another patient. Let’s get her in and out,” (Participant #20). Participants felt especially cared for when their surgeon listened and showed interest in what was important to them: “She listened and she asked questions, not just surface-level questions....And she seemed to be taking those answers into consideration when determining what we should do...” (Participant #26). Patients also valued surgeons who took steps to make sure the patient understood the information.

“She just communicated very well. And she, of course, left the decision totally up to me, but she was very open for any questions or concerns, and was able to answer everything, just very knowledgeable and just made me feel comfortable with the decision... You just sensed that she cared.” -Participant #24

Information exchange:

Many surgeons begin their consultation by sharing information specific to a patient’s cancer such as details of the pathology and imaging reports. For patients, this is often their first opportunity to receive personalized information about their cancer, such as cancer stage and tumor size. Participants said that their surgeon’s description of the cancer was reassuring. For example, surgeons’ use of phrases such as “it is such a small size” or “it wasn’t aggressive” when describing the cancer provided reassurance while conveying facts. Further, participants felt that surgeons’ demeanor when presenting the information was also very reassuring:

The fact that he was so matter of fact about it really reassured me. ...he didn’t sit down and say, ‘This is serious,’ which would have alarmed me more because I was already like, it’s serious enough.” -Participant #2

Throughout this process, participants viewed surgeons favorably who expressed confidence in their own knowledge and surgical abilities: “She [my surgeon] exuded confidence, which is a good thing for a surgeon” (Participant #1). Participants also appreciated surgeons’ expressions of positivity, such as “pep talks” with phrases such as “you got this” and “it’s going to be all right, we’ll get you through this.”

Presentation of surgical options:

Many participants were aware of the general options, but the surgeon consult was the first time women heard about their options in specific instead of the options in general. For many patients, being offered breast conservation as an option was enough to calm their emotions. Those who worried about losing their breast were relieved when they learned that it was not necessary:

I didn’t wanna [get a mastectomy]. If I had to, I would have, but just to hear that I didn’t have to do that, it was a sigh of relief. And it felt like a weight kind of was taken off of my shoulders. -Participant #21

Some women valso viewed being offered breast conservation as an indication that their cancer couldn’t be that bad: “Yeah, because it was so small, they didn’t have to do anything major as far as the breast and everything. And once I heard that, I really calmed down” (Participant #18).

Participants who were not candidates for breast conservation described benefit in having the surgeon explain the rationale for the recommendation they were making, as the logic helped to counteract the emotional reaction to the idea of mastectomy.

She didn’t say, ‘you have to get this done.’ But she did say, ‘I can’t recommend a lumpectomy, that’s not going to be effective in your cancer and in your tumor, so this is what we’re going to have to do in order to have the best outcome.’ ... So when she told me that, she asked how I felt about that and if I was OK with that, and I said, ‘yeah, I am fine with it.’ -Participant #4

Making plans for next steps:

The final phase of the consultation is making a plan. This could include choosing the surgery type or sometimes just setting up additional testing. Many participants expressed an urgency to decide on a treatment quickly and “just get it done”. “You do feel kind of rushed and pressured, like, ‘I don’t want this thing going on longer than it needs to. I want to do something fast’” (Participant #14). Some shared that they worried about cancer spreading while waiting for treatment: “What was most important to me was, get it out. We gotta move on with this, before it’s in a different stage or it’s in a different area. That’s what you think about” (Participant #30). Most of the women felt that having a “game plan” was key to alleviating uncertainty about the future and addressing the perceived urgency. “I felt a lot better leaving than I did going into that appointment” (Participant #6). Further, the details of surgery were often more manageable than what women initially anticipated: “Once I actually heard what was going to happen, it was much less scary or drastic than what I had in my mind” (Participant #18). Finally, participants found it reassuring when their surgeon conveyed that other women with similar cancers have had positive outcomes with the selected treatment plan.

I felt good and I felt kind of a sigh of relief, to know the choices and options. And she explained that it’s not that bad and she explained how the different women that have had almost basically same type of situation and their outcomes and things like that. So I kind of felt good after the meeting. I was able to smile and I was able to laugh, while I was in there and when I came out. So she kinda helped my frown turn upside down. -Participant #21

Discussion

Our interviews highlight ways in which patients’ emotional responses to their breast cancer diagnosis impacts their ability to engage in their surgical consultation. Participants described surgeons’ behaviors that helped de-escalate their emotional state, such as being personable, treating them as individuals, providing reassuring and matter-of-fact information, and efficiently communicating a plan for next steps. These findings are consistent with how other patients with cancer have felt reassured by their physician.^24–29

Emotion and Patient Decision Making

Emotion has been recognized as an important factor influencing patient treatment decision making, especially for breast cancer where the surgical decision is highly preference sensitive.^{10–12,14,15} However, despite the recognized importance of emotion as a component of patient-provider interactions, most SDM models do not explicitly discuss management of emotion. A systematic review of SDM models found that although discussing patient preferences and concerns was a component of 65% of the models, only 28% explicitly included identifying and addressing emotions.³⁰ Emotion management and development of a strong patient-physician relationship are increasingly recognized as essential components of successful SDM^31,32: “the fundamental uncertainty, state of vulnerability, and lack of power of the ill patient, imbue shared decision making with a deeper existential significance and call for greater attention to the emotional and relational dimensions of care.”³³ Our study reinforces that providers should deliberately manage patient emotion as a key step in promoting SDM.

Our findings about the importance of de-escalating emotion are also consistent with the extant literature on affect-oriented communication, variously defined as physician demonstration of empathy, honesty, and caring. Studies using standardized videos have demonstrated that affect-oriented communication can positively influence patients’ recall of medical information.^34–37 This makes sense because stress can affect learning and memory processes.³⁸ In addition, patients whose surgeons conveyed confidence about treatability of the cancer reported reduced levels of post-consult hopelessness.³⁹ Some have suggested that physician optimism about the chosen course of treatment may actually mitigate patients’ fear and anxiety through emotional contagion.^40,41

Our findings also align well with polyvagal theory, which describes how different physiological states associated with patients’ emotions impact how patients interact with others.⁴² For patients newly diagnosed with cancer, emotions and the physiological arousal accompanying them can affect how patients process information about their cancer diagnosis and make treatment decisions. The impact of emotion may be especially prevalent in breast cancer, given the strong feelings mastectomy can elicit. Patients experience varied emotions at the time of their surgical consult, including fear, worry and anxiety; the magnitude of these emotions can vary significantly between patients (lines #1, #2, and #3 in the yellow zone, Figure 4) ^3–5. For some patients, hearing the details about the cancer is overwhelming and their emotional arousal increases, leading to a “freeze” response (line #1 in the red zone, Figure 4). Patients in the red zone are “shut down” and unable to process information or engage actively in treatment decisions. In our interviews, this is exemplified by participants describing the surgical consultation as an “out of body experience”. Patients like this may require multiple conversations with the surgeon to reach a treatment plan and/or may benefit from incorporating other support persons, such as family members or cancer navigators, into the decision process. Other interview participants shared that their emotions subsided during the surgical consult (exemplified by lines #2 and #3 in Figure 4). Participants attributed much of this emotional de-escalation to surgeon behavior, such as being personable, confident, and matter-of-fact when conveying information and discussing treatment. Theoretically, de-escalation of emotion through these surgeon behaviors would support increased patient engagement in treatment planning and decision making.

Figure 4. How Emotion Impacts How Patients Engage during The Surgical Consultation.

The magnitude of emotions can vary significantly between patients (lines #1, #2, and #3). For some patients, hearing the details about the cancer is overwhelming and their emotional arousal increases, leading to a “freeze” response (line #1 in the red zone). Patients in the red zone are “shut down” and unable to process information or engage actively in treatment decisions. Other patients experience de-escalation of emotion during the surgical consult (exemplified by lines #2 and #3). De-escalation of emotion can support increased patient engagement in treatment planning and decision making. Adapted from polyvagal theory.

Benefits to De-escalating Emotion

There are a several potential benefits for surgeons who take time to address patient’s emotions during the surgical consult. First, addressing emotion can improve patient satisfaction with the consultation.^25,39,43,44 Patient satisfaction is important to surgeons, given the increased emphasis on quality metrics in healthcare.⁴⁵ Quality metrics are increasingly shared publicly and have also been linked to reimbursement. Prior studies have demonstrated that even just 40 seconds of physician compassion can reduce anxiety and improve physician ratings.⁴⁶

Second, addressing patients’ emotions improves surgeon time efficiency. If addressing emotion can improve patients’ information comprehension and recall, this may translate into fewer follow-up phone calls for clinic staff and surgeons. In addition, providers who respond to patients’ emotional cues may experience reduced visit length.^47,48 Even for patients in the highest emotional state who may require more than one interaction to finalize a treatment plan, deliberate efforts to address emotion within the first consult will build trust between the patient and the surgeon and make subsequent interactions more effective.

Finally, deliberately managing emotion may help to counteract unconscious biases within surgeon-patient interactions. Studies have shown that physicians of all races are more verbally dominant and tend to have less patient-centered communication with Black patients than White patients.⁴⁹ White physicians in particular are less able to pick up on affective/emotional cues when their patient is non-White.^50,51 These disparities in clinician responses to patient emotions have been found in both real consults and hypothetical scenarios.^49–53 Surgeons, especially White surgeons, may need to be especially intentional about addressing emotion when they are caring for patients from underserved communities. Our study, which is based on a racially and socioeconomically diverse cohort of women cared for primarily by White surgeons, highlights steps that effectively address emotion and increase patient comfort during the consult. While health care providers have a long way to go in addressing systemic inequities, addressing emotion is one small step toward mitigating disparities in breast cancer surgical care.

Limitations

Our study has several limitations. First, our study only captures the perspectives of patients with low engagement in their surgical consult. However, the importance of emotion management for patients diagnosed with cancer is broadly generalizable. Our study also has the potential for participation bias. Although it is possible that non-participants may have different experiences, this is less likely given how well our findings fit within the broader literature. Finally, participant interviews occurred after their breast cancer treatment was completed and there is the potential for recall bias. However, the strong nature of patients’ emotions around the time of diagnosis minimizes the risk of bias.

Conclusion

Our findings indicate that patients with breast cancer are often emotionally overwhelmed both before and during their surgical consult, which impedes their ability to listen and participate fully in decisions about their treatment. However, surgeon behaviors can help de-escalate the emotional nature of the surgical consultation. By addressing emotion, surgeons are providing critical support to patients facing a decision for breast cancer surgery that may improve patient satisfaction and engagement with the decision process.